“Under normalcy, no one is or can be normal, just as no one is or can be equal. All have to work hard to make it seem like they conform, and so the person with disabilities is singled out as a dramatic case of not belonging. This identification makes it easier for the rest to think they fit the paradigm.”

This is the beginning of a series of blog posts on disability and academia, partly based on recent experiences I’ve had as a disabled/neurodivergent attender of academic conferences. Part 2 will be about physical access (oh, and how much fun I’ve had with that over the past year). And there will be a part with recommendations. This part, though, is about my experiences of neurodiversity access at conference. It’s going to be a long one, so I’m dividing it up with headings – readers can jump to the section that they’re most interested in.

Image: ‘See the Light’ by Vinoth Chandar – Flickr Creative Commons. Light shines through a door into the darkness.

Nancy Eiesland’s wonderful book ‘The Disabled God’ includes a disabled person talking about her experience of the pressure to appear ‘normal’ in church:

She [the pastor] said, “Well, Diane, you can’t get in the choir.”And I said, “Why not?”And she said, “Well, for one, there’s a step going up to the choir.”“Yeah,” I said. “You could make a ramp. Or, I could be up there already when the choir marches on.” […]“Oh, no,” she said. “And plus that, when we all stand, and you’re sitting there, that would look so awful. It would look so uneven. And what about your robe? You can’t wear a big old robe.”I said, “I could get one made for me.”She said, “Oh, it just wouldn’t look right.”– Eiesland, ‘The Disabled God: Towards a Liberatory Theology of Disability’, p.35-36

I’ve given talks at two conferences recently. At one, I talked about normalcy, and the way that disabled people in the churches are caught up in ideas of needing to be ‘normal enough’, and good enough, to attend church – whether that’s about being told what it means to have ‘enough faith’ as a disabled person, or hearing ministers speak about how disabled people will (and must) be healed in heaven. This is almost always covert and subtle – it’s something that isn’t talked about clearly, but runs underneath all of the Church’s theology – in its sermons, in its ‘pastoral’ services for disabled people, in the language that it uses about disabled people… It’s unspoken, and therefore hard to challenge. At the other conference, I talked about ‘imaginative hermeneutics’ – which essentially means telling the lost stories of disabled people, particularly in the Bible. There are many disabled people in the Bible, but they only incredibly rarely have a voice of their own, and they are always, always healed. (What does that mean for the rest of us?) I talked about how re-telling their stories, imaginatively, may be one way for disabled people to reclaim their voices in the churches.

We cannot tell our stories if they are not listening.

And both ideas – challenging normalcy and creating new stories – must involve listening to disabled people. We cannot tell stories of disabled people without their input – that’s been done to disabled people far too much, for far too long. And I would argue that we cannot understand normalcy without the input of disabled people either. The pressure to be ‘normal’ is very difficult to understand from an outside position. So when Wayne Morris and Ron McCloughry explicitly reject the views of disabled people, because they don’t find them useful, they have failed to listen to the disabled community and disability studies – and that’s oppressive.

And we cannot tell our stories if they are not listening.

In particular, church leaders, theologians, and members of the churches must listen to theologians who come from a disability studies context or from within the disabled community. At the moment, they’re mostly not listening. And that’s partly because they know that the churches are responsible for excluding disabled people, and that it needs to get its act together. The Church doesn’t want to hear how it has contributed to oppressive normalcy. But normalcy doesn’t appear out of nowhere. It’s created by the Bible, theology, church practices and traditions. The churches draw on modern society’s ideas about what is ‘normal’ and acceptable, but the churches’ ideas on the subject also predate these – and in some cases, the churches helped to create our modern social discourse of normalcy. No wonder theologians and church representatives get angry or defensive when these ideas of normalcy are brought into the light. But we won’t hide our lights under a bushel!

We cannot tell our stories if they are not listening.

Where can we find examples of disabled people talking about these things? In terms of normalcy, it’s written about all through disability studies writing (which isn’t hard to read, especially if you read disabled people writing about their own experiences). The classics are really good – like Jenny Morris’s ‘Pride Against Prejudice’, Eli Claire’s ‘Exile and Pride’, and Mark Priestley, and Colin Barnes, and Carol Thomas… On the subject of disability and theology/church itself, if you’re up for some quite difficult reading, I love Betcher’s ‘Spirit and the Politics of Disability’, which has been ignored by theologians and disability scholars alike, which is a terrible shame as it’s an amazing book. There’s also the wonderful ‘Deaf Liberation Theology’ by Hannah Lewis, which is very readable and which I think everyone working in churches should read. And anything by the wonderful John Hull, and by Jennie Weiss-Block, and Kathy Black. The reason I think that disabled people should read writing like this, is that we need to be armed and ready to fight back against the inevitable resistance that comes when we call for our stories to be heard. If we can see normalcy, we can challenge it.